Aa
Terrified
Im really worried about MS...Im totally freaking out...I want to just sleep and sleep and not think about it ..or cry...I wonder what my life will be like in my thirties or even fourties and fiftys...Im terrified...Will i lose my ability to think??What will happen to me...Everything so scary...The future seems so scary...I just wanted to share my thoughts with you because i know you understand and know what im going thru..I think i will have a nervous breakdown please help me...
to inny2009:I my self im 22 and i feel similarly to you...I can understand you and you are right lets hope they find a cure for MS already ...This forum has proven life saving...If you all knew how much this means to me as i have nobody to talk to...i just decided that whenever i feel down or taken aback from the disease ill just talk with you guys if thats ok...You are my cheering team...
Thank you
hugs and love
Audrey
Thank you
hugs and love
Audrey
Audrey,
if you can stop for a moment and think about what your future would bring, before you heard that you have MS, would you have been able to honestly construct it? No, because none of us know what is ahead for us.
What we can do is construct our dreams ... you have some good ones started and those are the dreams that will carry you through if you have tough times with the MS.
The face of this disease has changed dramatically over the years. We know our life span is no longer shortened by MS. We know there are several variations of MS and those who are fortunate to have milder versions give up very little.
Those of us who have MS that needs to be treated, have options and many more new treatments appear to be on the near horizon. We know these drugs work to improve our quality of life and slow the progression of MS. The recent Copaxone studies show a group of patients they have followed for over 18 years have done exceedingly well - 80%+ are still ambulatory and walk without assistance.
When you first got this news, you saw your dreams fly away. As you work through the details of how you are going to treat your MS and begin to understand that you are still the same person, those dreams will creep back in. I promise they are still there.
we are here for you - you are not doing this alone.
Lulu
if you can stop for a moment and think about what your future would bring, before you heard that you have MS, would you have been able to honestly construct it? No, because none of us know what is ahead for us.
What we can do is construct our dreams ... you have some good ones started and those are the dreams that will carry you through if you have tough times with the MS.
The face of this disease has changed dramatically over the years. We know our life span is no longer shortened by MS. We know there are several variations of MS and those who are fortunate to have milder versions give up very little.
Those of us who have MS that needs to be treated, have options and many more new treatments appear to be on the near horizon. We know these drugs work to improve our quality of life and slow the progression of MS. The recent Copaxone studies show a group of patients they have followed for over 18 years have done exceedingly well - 80%+ are still ambulatory and walk without assistance.
When you first got this news, you saw your dreams fly away. As you work through the details of how you are going to treat your MS and begin to understand that you are still the same person, those dreams will creep back in. I promise they are still there.
we are here for you - you are not doing this alone.
Lulu
Hey audrey.
Im 22 years old with a 15 month old baby. Ill be married 2 years this october. I WAS a certified nursing assistant and getting ready to get my LPN degree. I have been battling these symptoms for 3 years almost 4. I can barely walk, I have to hold on to things so I dont fall. I look like a 22 year old acting like an 80 year old. Im scared to.
I wonder whats going to happen, how im going to be able to care for my son, who is still a baby and will be needing me for quite some time yet. My husband I are getting out of that newly wed phase, and while I told him i was sick before we started dating, I worry that he is too young to want me, who is too sick. Im not like those girls who can just get up and take a walk around the lake. lol heck, I can barely walk to the bathroom!!!
But audrey, It will be ok. I get really scared but then I say...hey you know what. Im wasting soo much time being scared that I could use spending time with my loved ones.
Or why not use this time instead of worrying but to promote MS awareness! I dont know if you heard or not. But they just found a POSSIBLE cure for breast cancer! I heard it on the news..it involves shots ...it would act like an immunization.
I know this isnt a breast cancer forum but what im trying to say is ...if they can find a cure for breast cancer...In a couple years from now they might find one for MS! You cant give up hope, audrey..your too young...and this is coming from a 22 year old!!!
If you need anything Im here!
Inny
Im 22 years old with a 15 month old baby. Ill be married 2 years this october. I WAS a certified nursing assistant and getting ready to get my LPN degree. I have been battling these symptoms for 3 years almost 4. I can barely walk, I have to hold on to things so I dont fall. I look like a 22 year old acting like an 80 year old. Im scared to.
I wonder whats going to happen, how im going to be able to care for my son, who is still a baby and will be needing me for quite some time yet. My husband I are getting out of that newly wed phase, and while I told him i was sick before we started dating, I worry that he is too young to want me, who is too sick. Im not like those girls who can just get up and take a walk around the lake. lol heck, I can barely walk to the bathroom!!!
But audrey, It will be ok. I get really scared but then I say...hey you know what. Im wasting soo much time being scared that I could use spending time with my loved ones.
Or why not use this time instead of worrying but to promote MS awareness! I dont know if you heard or not. But they just found a POSSIBLE cure for breast cancer! I heard it on the news..it involves shots ...it would act like an immunization.
I know this isnt a breast cancer forum but what im trying to say is ...if they can find a cure for breast cancer...In a couple years from now they might find one for MS! You cant give up hope, audrey..your too young...and this is coming from a 22 year old!!!
If you need anything Im here!
Inny
I am sure that we all feel terrified or what we imagine may be ahead...but this is the truth....absolutely none of us know our journey or path for the future. You are right..it is incredibly scary thinking aobut what may be......and I avoid thinking too much as I fear losing control of my life more than anything.
However I beleive that today is important and living my life now. It is easy for irrational thoughts to take over our thought process and when this happens things spiral and that small feeling of being a bit fearful grows into an almightly rollercoaster of panic, anxiety and gut wrenching terror. It is a cycle of thoughts, feelings and behaviour which all interact with each orher.
You have the ability to control this by not letting that small fear grow. As Alex suggested it may help to talk to a counsellor but as this is my job I am hardly not going to recommend it. It is really good to acknowledge what you are feeling but it also helps to put it into perspective and to channel all that negative energy into a different direction.
it may help talking to someone outside the family and friends who can be objective.
I do believe that sometimes one door may close and another may open. I would really encourage you to stay open to the possibility of doing your Masters. I did a Masters Degree in Education specialising in Autism in my 40's (yes I am still in that decade now!) and I am so glad that I did it....it was for me and my own achievement.
In 30 years time you could look back at yourself and really regret not having achieved your potential. You have a life ahead of you, so live your dreams, do not put barriers in front of yourself and maybe read some more about MS and you will find that many people continue to live fairly normal lives..but they just learn to manage their symptoms to give them the best quality possible.
With love and encouragement
Sarah x :)
However I beleive that today is important and living my life now. It is easy for irrational thoughts to take over our thought process and when this happens things spiral and that small feeling of being a bit fearful grows into an almightly rollercoaster of panic, anxiety and gut wrenching terror. It is a cycle of thoughts, feelings and behaviour which all interact with each orher.
You have the ability to control this by not letting that small fear grow. As Alex suggested it may help to talk to a counsellor but as this is my job I am hardly not going to recommend it. It is really good to acknowledge what you are feeling but it also helps to put it into perspective and to channel all that negative energy into a different direction.
it may help talking to someone outside the family and friends who can be objective.
I do believe that sometimes one door may close and another may open. I would really encourage you to stay open to the possibility of doing your Masters. I did a Masters Degree in Education specialising in Autism in my 40's (yes I am still in that decade now!) and I am so glad that I did it....it was for me and my own achievement.
In 30 years time you could look back at yourself and really regret not having achieved your potential. You have a life ahead of you, so live your dreams, do not put barriers in front of yourself and maybe read some more about MS and you will find that many people continue to live fairly normal lives..but they just learn to manage their symptoms to give them the best quality possible.
With love and encouragement
Sarah x :)
It is ok and normal to be scared/terrified - you will get through this .......breathe :)
Hugs!
Marty
Hugs!
Marty
Hi Audrey,
I feel so bad for you and anyone who has to suffer with the emotional aspects of this disease. Sounds like this is hitting you like a ton of bricks. There is probably little solace in the fact that you are not alone, however. There are so many of us that share your feelings. I'd like to say that it is normal to experience these feelings, but it's so subjective and such a relative term.
Personally, I too am "terrified" about what the future holds; and I will hit 58 soon and am about to enter the so-called "Golden Years." For better or worse, because of the unpredictability and variability of this damned disease, it is impossible to say what the future holds – I am certain you know this.
As Shell mentioned, living in fear helps neither you or loved ones. I am not implying that it is easy to drop the fear and go on living. It is not easy, and it takes time, but it is not an insurmountable task. Taking it in small steps (like writing to people in this community may seem insignificant, but it is a big step. The key is to continue to communicate with loved ones and others who share your situation
You might want to check into a MS support group in your area. But keep the communication going., especially with loved ones. I have a few other medical conditions in addition to MS. I am not “blowing my own horn here” but I have two Masters Degrees and before disability a few years ago, had a fruitful a and satisfying career. I try to keep positive and enjoy life.
I've said this before and will say it again. One of the most amazing things I've noticed about the people I worked, as well as seeing with people in this community is that that amidst all the pain and suffering we can still experience the sublime that life has to offer.
Enough rambling. Do not hesitate to write, and never consider yourself to be a bother to anyone.
Thoughts and prayers are with you,
Frank
I feel so bad for you and anyone who has to suffer with the emotional aspects of this disease. Sounds like this is hitting you like a ton of bricks. There is probably little solace in the fact that you are not alone, however. There are so many of us that share your feelings. I'd like to say that it is normal to experience these feelings, but it's so subjective and such a relative term.
Personally, I too am "terrified" about what the future holds; and I will hit 58 soon and am about to enter the so-called "Golden Years." For better or worse, because of the unpredictability and variability of this damned disease, it is impossible to say what the future holds – I am certain you know this.
As Shell mentioned, living in fear helps neither you or loved ones. I am not implying that it is easy to drop the fear and go on living. It is not easy, and it takes time, but it is not an insurmountable task. Taking it in small steps (like writing to people in this community may seem insignificant, but it is a big step. The key is to continue to communicate with loved ones and others who share your situation
You might want to check into a MS support group in your area. But keep the communication going., especially with loved ones. I have a few other medical conditions in addition to MS. I am not “blowing my own horn here” but I have two Masters Degrees and before disability a few years ago, had a fruitful a and satisfying career. I try to keep positive and enjoy life.
I've said this before and will say it again. One of the most amazing things I've noticed about the people I worked, as well as seeing with people in this community is that that amidst all the pain and suffering we can still experience the sublime that life has to offer.
Enough rambling. Do not hesitate to write, and never consider yourself to be a bother to anyone.
Thoughts and prayers are with you,
Frank
You have no idea in how many ways your words have comforted me...There are times where i feel i can make it others that i m so terrified....I was never a strong person...Never...so trying to be strong for me and my family is now a difficult task.
Its the uknown that scares me and i really pray that i find some way to cope with it....
Thank you so much and please stay in touch ...I really need you right now:)
Hugs
A
Its the uknown that scares me and i really pray that i find some way to cope with it....
Thank you so much and please stay in touch ...I really need you right now:)
Hugs
A
No one knows how any of our MS will go. I freaked when I found out I had MS I acted like my life was over. Fear is the biggest limiting factor of any disease. You have to focus on what you can do not what you can't. It turns out I have had MS since childhood, over forty years. I learned how to do everything play ball, climb stairs, even drive a car with double vision. I have also always had vertigo, left side weakness, and memory/thinking problems, and depression. No one gave me a break.As a teenager I ended up years in a State Hospital.
Since my diagnosis I have ridden in a hot air balloon, hiked parts of the Appaulachain trial, trained my own service dog, and have started riding lessons. My next goal is to ride in a glider. A lot of times I stand on crutches.
If I can't go anywhere I watch travel shows or read. If I can't read I listen to books on CD and travel in my imagination.
It is okay to get scared and overwhelmed that is the first step. Then you need friends to talk you off the ledge. I had to get a counselor. She has been invaluable. Then I have my MS Support Group. We are in all stages of disability but we can all swim.
Our local National MS Society has a group for young folks, they meet once a month.
Your life is not over we get to reinvent ourselves. If it is not MS something else in life comes a long. Life is not like a straight line to a goal.
I am the happiest I have ever been. There are frustrations but life is good. I can either get up and concentrate on what does not work or try to make the best of what does work.
Hang in there,
Alex
Since my diagnosis I have ridden in a hot air balloon, hiked parts of the Appaulachain trial, trained my own service dog, and have started riding lessons. My next goal is to ride in a glider. A lot of times I stand on crutches.
If I can't go anywhere I watch travel shows or read. If I can't read I listen to books on CD and travel in my imagination.
It is okay to get scared and overwhelmed that is the first step. Then you need friends to talk you off the ledge. I had to get a counselor. She has been invaluable. Then I have my MS Support Group. We are in all stages of disability but we can all swim.
Our local National MS Society has a group for young folks, they meet once a month.
Your life is not over we get to reinvent ourselves. If it is not MS something else in life comes a long. Life is not like a straight line to a goal.
I am the happiest I have ever been. There are frustrations but life is good. I can either get up and concentrate on what does not work or try to make the best of what does work.
Hang in there,
Alex
Hi Audrey,
I'm so sorry that you are feeling so scared---and rightfully so. The truth is that the future is unknows for all of us with or without MS. Sure, MS makes it all the more difficult to think of a positive outcome, but you may go into remission for a very long time.
It is very hard to predict this disease, yet the healthiest you remain is so helpful. I mean diet excercise etc. Part of what helps us is having a base of support as well as having a good social life.
I would really encourage you to go for your masters degree. I have my masters degree and I loved every minute of grad school. It's an instant community of like-minded people and support from all of them. It's really a great time.
I know that you want to make money, yet I think your chance of making more money will come with increased education.
(((Hugs)))
Red
I'm so sorry that you are feeling so scared---and rightfully so. The truth is that the future is unknows for all of us with or without MS. Sure, MS makes it all the more difficult to think of a positive outcome, but you may go into remission for a very long time.
It is very hard to predict this disease, yet the healthiest you remain is so helpful. I mean diet excercise etc. Part of what helps us is having a base of support as well as having a good social life.
I would really encourage you to go for your masters degree. I have my masters degree and I loved every minute of grad school. It's an instant community of like-minded people and support from all of them. It's really a great time.
I know that you want to make money, yet I think your chance of making more money will come with increased education.
(((Hugs)))
Red
Don't give up on your dreams and goals Audrey! Go for your masters - don't give up.
Are you on disease modifying drug? DMDs are our front line defense in the fight against MS.
Please visit our health pages to learn more and I'm sure others will have more to say soon.
-shell
Are you on disease modifying drug? DMDs are our front line defense in the fight against MS.
Please visit our health pages to learn more and I'm sure others will have more to say soon.
-shell
Well typically i always see something to hope for...But at such a young age wont it only get worse???I feel like i cant do any more with my life...I was ready to start a masters degree but now i wont i want to work and raise money before i am disabled...It so hard...Sorry for mumbling.....
Thank you very much
Thank you very much
You are not bothering us at all and we def. understand.
It can, and does get better for many. Knowledge and time (and us of course) will suffocate a lot of that unknown for you.
Tell us if you can how you typically get pas the panic unknown stuff...
It can, and does get better for many. Knowledge and time (and us of course) will suffocate a lot of that unknown for you.
Tell us if you can how you typically get pas the panic unknown stuff...
Yes i do panic for the unknown...But the chances now seem so negative...I dont know im sorry to bother you all but i dont know anyone who will understand....I just finished college and being diagnosed now..Well it is really life changing...I dont know if i have enough strengh to handle it...Is it always like this or does it get better???
Morning Audrey!
The future is unknown sweety. We don't know what is in store for us. All we can do is "trust" everything will be ok.
I'm so sorry you are terrified and hope to help you by saying that living in fear will not help you help yourself, or others. We are still here - we have alot to contend with, some more than others.
I'm glad you shared your thoughts and I know our members words will help you pull yourself together. Remind me Aud -- when were dx'd w/MS? There are lots of newly dx'd seminars where they have counsel to help w/these very feelings.
It's also very important to understand that if you generally get panicky over the unknown, then you will handle the MS dx in the very same way. Is this so for you? Let us know, so we can help you out w/that.
-Shell
The future is unknown sweety. We don't know what is in store for us. All we can do is "trust" everything will be ok.
I'm so sorry you are terrified and hope to help you by saying that living in fear will not help you help yourself, or others. We are still here - we have alot to contend with, some more than others.
I'm glad you shared your thoughts and I know our members words will help you pull yourself together. Remind me Aud -- when were dx'd w/MS? There are lots of newly dx'd seminars where they have counsel to help w/these very feelings.
It's also very important to understand that if you generally get panicky over the unknown, then you will handle the MS dx in the very same way. Is this so for you? Let us know, so we can help you out w/that.
-Shell
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